Tips for being a good care advocate for a family member in the hospital?
December 28, 2021 3:03 PM   Subscribe

Elderly relatives keep getting admitted for various health crises, then getting sucked into cascades of interventions leading to protracted hospitalization and generally worsening health. I am not confident in the quality of evidence-based decisionmaking in our overburdened local hospital network, and they are also really terrible at communication. I would like to be more active in asking questions, exploring multiple options, finding and seeking care from the most competent specialists, and generally double-checking the recommendations at each step of care. What are some good tips for being successful at this type of watchdog advocacy?

If the degree of relatedness makes a difference, we're talking roughly the level of adult children advocating for parents.

The patients (and their spouses) generally have a working-class cultural model of healthcare interactions: the patient is supposed to be passive, obedient, trusting, not to shop around or request second opinions, and especially not to offend or "bother" staff by asking too many questions. So if this kind of advocacy is perfectly fine and expected, it'd be helpful to know that too.

I'm especially interested in the following:
  • When is it appropriate to track down a clinician to ask about the specific results of a test, or about their interpretation of a new piece of data?
    And in practice, how does one actually make that conversation happen?

  • Suppose there is a question or concern potentially affecting a treatment decision (like: what's the reasoning for surgery and not medical management here? Why do this now, rather than waiting? How would other condition Y impact this recommendation? How does this follow from Z test results? How does this recommendation square with the seemingly contradictory results of this recent meta-analysis?). When is the best point to bring that up in a way that might actually impact decisionmaking (if appropriate)? What social approach will result in those questions being answered seriously with logic, rather than brushed off hastily?

  • What elements of medical care may a hospitalized patient actually refuse? When can patients or family insist on receiving information about alternatives to a recommended procedure?

  • What are the best ways to research and assess the backgrounds and track records of individual specialists and surgeons in a hospital? If some providers have better track records than others, to what extent may a hospitalized patient or patient's family advocate to receive care from a particular person, rather than someone else?

  • Are second opinions a thing for hospitalized patients? If so, how does that process work?

  • Any related insider info: for instance, what parts of hospital care generally function well and don't need much scrutiny? What are points where family advocacy might potentially make the most difference?
  • posted by Bardolph to Health & Fitness (16 answers total) 21 users marked this as a favorite
    Penny Simkins' Key Questions About Your Healthcare is a simple, empowering tool. You can see her very short set of Qs here if you scroll down. Simkin sells purse/wallet cards on her website. The Qs arose out of her work as a doula. But they apply to anyone.
    posted by Text TK at 4:04 PM on December 28, 2021 [6 favorites]

    Re question 2: in the US, the patient or their representative needs to give an informed consent to any treatment if possible (exceptions in emergency when delay might cause death). That's why it matters (1) if you have a health care power of attorney (2) if relatives present as competent or confused (age matters here in terms of staff assumptions about this) and (3) your relative's willingness to say "I don't know, I have to talk with bardolph first" Once you are established as someone with power to consent, then they are more motivated to find the time to work with you.

    Re question 1: We have good luck talking to doctors about the options and why this rather than that but we always either there at the hospital or just a phone call away (and we made sure people knew the phone number)
    posted by metahawk at 4:34 PM on December 28, 2021

    Nurse here, and potentially more relevantly a recent Medical Power of Attorney (POA) for an elderly relative who was hospitalized and then in a nursing home on hospice.

    Are these people who are competent? If so, your intervention as a non-spouse and non-adult child can be legally ignored by the medical staff: in the decision hierarchy it's the patient first, then spouse, then adult children. You can certainly advise your relatives concerning when to be more assertive/ask questions, but if you are perceived by the staff as "difficult" or "confrontational" you will probably be politely ignored.

    You may have more success gently suggesting questions and bringing up lapses in options and information provided to your relatives. Doctors will explain as much, or as little, as they think the patient or family want to hear. Many times people actually depend on passivity to comfort themselves and trust that the doctors will know what to do. I understand that this is not objectively the best thing to do, and is clearly not what you think should occur, but many patients want no part of complicated decision-making when they are hospitalized. They want to be out of pain and feel that the professionals are doing what needs to be done.

    Though if you hang around a lot and are perceived as being invested in your relative's care, and their family members are present, they may speak frankly with you in the presence of the patient or immediate relative. You might be able to ask questions in such a circumstance, but not without the patient or next of kin present. HIPAA is taken seriously by medical staff. But be prepared to be swatted down by your relatives if they are not in agreement that questions need to be asked. The doctors will take their cue from the patient and immediate family.

    One suggestion easy to make is to ask what "Service" the patient is on and who is the Attending Physician, the doc in charge. If there are consultants (cardiology, oncology, pulmonology) ask if they are attending physicians (in their specialties) or residents or fellows, who are doctors in specialist training in their specialties. The doctors in training generally gather information, but the Attendings, and particularly the main Attending who will make the ultimate decisions. This is often far from obvious and has real implications. Patients often have no idea how hospital medical hierarchy works and who to ask questions of.
    posted by citygirl at 5:01 PM on December 28, 2021 [11 favorites]

    I think first of all you have to get some clarity about your role and your goals. An extraneous person showing up and howling about the medical industrial complex is not compassionate or helpful. And, as folks reach the end of their earth years, the quest for medical solutions is less and less important, it is about care and quality of time.

    Here are some of my thoughts and experiences, hope they help.

    In a hospital setting, you wait for the docs and specialists to show up. Other folks, such as nurses, might be able to report on the outcome of tests, and will convey specialist’s orders.

    To discuss anything, including questioning specific treatments and medical interventions, we had to just wait til the doc showed up.

    The nurses have knowledge but no power, so they can be cagey about stuff, but if you can get a rapport (sp?) going, they can often offer some insight.

    I think the patient can always refuse treatment and even self check out, but that is not necessarily feasible.

    For being a good advocate, I have found being a little imposing—friendly but assertive, has helped with attention and responsiveness. Greet the nurses and techs, say who you are and generally engage. How are his vitals? What is that med you are giving in the IV? Etc. Express gratitude.

    The hospital experience is very granular—one person checks the vitals, another changes the bedding, someone else will dispense meds. So ask the same questions to everyone. For example, when is the MRI happening? And, can he have a shower? Can the bedding be changed?? I kind of thought they'd be on this, but nah.

    For food, we found an ally in the delivery person. When she understood the food issues, she freely offered items not on the list.

    Hope this is is helpful, good luck.
    posted by rhonzo at 6:05 PM on December 28, 2021 [1 favorite]

    I'm a high utilization patient with a serious end-stage illness who has received millions of dollars of medical care within the past six years. I've spent a lot of time in hospital gowns, and wrapped up in various tubes and wires and beeping machines, and I have some pretty impressive surgical scars.

    In a way, caregivers and advocates are in the toughest position because you're missing a ton of information from both the patient and their providers: you can't personally feel what the patient is feeling or experience what the patient is experiencing, and you don't have the medical training to fully understand the nuances of the tests your providers are interpreting or personally vet the merits of each treatment option. It's frustrating and scary, and it's hugely emotional, too, because you want the best for your loved one.

    From your questions, it sounds like you've interpreted the advocate's job as to scrutinize, take charge, be assertive, debate technical research with doctors, and check every specialist's success rate.

    But your real job is BUILDING RELATIONSHIPS. If there's actual neglect, abuse, or malpractice, by all means, raise every possible alarm. But for the most part, the secret to getting 99% of the way to the best care available at the facility is to treat providers with genuine kindness and a level of professional respect. Don't kiss up or try to impress them. Don't try to compete. Be genuine and direct, and respect their time. When you do, providers are more likely to speak more candidly. They're more likely to spend more time with you. And when they do, let them talk. They're more likely to chat freely about alternatives and outcomes. They're more likely to advocate for you within their own teams.

    That's how I get the answers I need. Not by debating the nuances of my red blood cell distribution width on my CBC (turns out it's fine!), but by taking a personal interest and by asking good questions and listening actively and by very, very carefully choosing my battles. Providers see unpleasant, combative people all day. I try to be the active, engaged patient they look forward to checking in on. As the advocate, you can help build that kind of relationship, which will improve the patient's overall experience.

    Providers are the experts on the medical treatment, but as a patient, I am the expert of what my body is experiencing and what I want my outcomes to be. By being the advocate, that's something you can help vocalize and keep the focus on. Sometimes as a patient, you surrender. Other times, you assert. But for the most part, this is a partnership.
    posted by mochapickle at 6:33 PM on December 28, 2021 [43 favorites]

    And I'm googling like mad and I can't find the statistic, but a study several years ago revealed that that patients do get better care overall when a family member or friend is a regular visitor. I think it has something to do with humanizing the patient in the eyes of busy providers, adjusting the focus a bit.

    So just by being there, you are improving the outcome.
    posted by mochapickle at 6:48 PM on December 28, 2021 [13 favorites]

    I wish I could like mochapickle’s answer many times over. The other thing I’d add: the past 2 years have been hell for doctors, nurses, and others in healthcare. I’ve seen many people just quit, and many more sink into a deep depression. Please advocate for your family member—everyone needs that. But my sense is you feel this is “us vs them” situations, and it’s not. Doctors and nurses have been straight up abused by patients and their family members the past 2 years and the burnout is very real. Please keep that in mind when you’re going in to debate a physician about a meta-analysis you found on pubmed.
    posted by namemeansgazelle at 9:03 PM on December 28, 2021 [12 favorites]

    100% what mochapickle said.

    I was a primary caregiver for my sister as she went through several years of terminal illness with multiple comorbidities. Over the last eighteen or so months of this she was continuously in either hospital or nursing facility care.

    The lesson I learned from this is "know your caregivers". Whenever I visited my sister, she introduced me to all the staff. She knew the names of everyone who came in and out of her room. She knew their kids' names. She knew which island they were from and what their dreams were. Even as the universe was kicking the shit of her, she 100% there for the people around her.

    And it came back to her. All of her caregivers cared about her. The dude who mopped the floor smiled when he came in the room, because he was happy to see her.

    And all of that had a tremendous impact on her quality of life, and also on the quality of the care she received.

    She went through a lot of transfers between facilities -- from the hospital to a skilled nursing facility, then back to the hospital, then off off to a different skilled nursing facility because that's where they had a bed, etc, etc. And at every transfer, the hospital workers really went to bat for her, to try to find a good place for her to go. During her final month or two, the place she was in just gave her this huge private room, so she could have space. I don't know how they managed that, but they did.

    Oh, and at a practical level, transfers suck when you need any kind of complicated care. Continuity of care is really difficult, and in my experience, family can play a huge rule improving continuity by communicating with caregivers on both sides of the process. Just being there, and letting the new people know about the little things that make your relative comfortable can make a big difference. Arranging the room. Making sure they have the things they need around them.

    Good luck with the journey.
    posted by alms at 10:12 PM on December 28, 2021 [7 favorites]

    I'm sorry you're dealing with this . It's a tough position to be in.

    Seconding what mochapickle and citygirl have said. You may also want to ask for a family meeting, where you can get some dedicated, sit-down time with the primary medical team and any relevant consultants. This assumes that you are the legal decision-maker, though. If the patient has capacity to make their own medical decisions, you're in the background, no matter how much you may disagree with them or their doctors.

    to what extent may a hospitalized patient or patient's family advocate to receive care from a particular person, rather than someone else?

    Hospital rotation schedules are set months, sometimes up to a year, in advance. Requesting a private consultation outside the schedule will get you labeled as high-maintenance. The exception is if you already have a doctor-pt relationship with the person you're asking for (like your PCP or someone you see for outpatient specialty care), in which case they should hopefully be communicating with the primary team already. But asking for Dr. Jones who you googled last night is more than likely to backfire.

    Given the very understandable distress in your question, you may want to ask for a palliative care consultation, especially if the challenges are health crises and communication. Contrary to popular belief, palliative does not mean hospice, and in fact health crises, symptom management, and communication is literally what they do. But again, ask if the palliative service can be involved, not specifically for Dr. Smith, and if your family member has capacity, make sure they are OK with that suggestion!
    posted by basalganglia at 2:06 AM on December 29, 2021 [1 favorite]

    Response by poster: Thanks, everyone! Not threadsitting, but as a very quick follow-up, since some folks have advised "just always being there, waiting for someone to turn up" in order to have any communication with doctors- is camping out for 12hrs/day really the only way to have conversations about care? We are diligent visitors, but with jobs, families, the need for bathroom and lunch breaks, that sounds incredible (plus, introverted patients do not want people around for 12 hours per day). Is there any way to narrow down a window when the relevant doctor might be present, so as to focus the visit on that time?

    (To put this into perspective, there's every intention of being very genial and polite; we're talking hospital stays of a week or two around emergent problems; and the issues around communication are things like patient reporting multiple doctors giving completely contradictory reports of serious findings, waiting days in hospital without discharge and no communication as to why, and serious surgery being scheduled unilaterally at the admitting hospital with no discussion of long-term risks or cost-benefit reasoning (including better-outcome procedures available elsewhere). Mostly the desire is to have a reliable way to find out from somebody what is even going on, rather than having complex medical information relayed only through the patient.)
    posted by Bardolph at 5:12 AM on December 29, 2021

    Best answer: The nurses always seemed to have an idea of when the doctors would make their rounds, and we found that being in the room during those hours allowed us to ask questions, either of the doctors or of their (always helpful) assistants. I also remember nurses placing calls with doctors, and doctors calling us back. It is overwhelming -- your question reminds me of those times for us, and how hard it could be to find answers.
    posted by Francolin at 7:15 AM on December 29, 2021 [3 favorites]

    Best answer: Bardolph, I woke up this morning thinking about you. This is such a hard thing to navigate and I'm sending good energy your way. It does get easier in many ways.

    Ask the nurse what time rounds are. This'll usually be early in the morning, and it's kind of an infodump with several of your loved one's doctors present. They'll discuss treatment, medication changes, updates, the short-term plan, discharge and surgery plans, etc. It's the most important time of the day, and being present for that is a million times better than staying for 12 hours just waiting for a doctor who might not even be back that day. When a friend was in the hospital long term for a TBI, her husband made a point to make it to rounds every morning. You won't have a ton of time -- there's sort of a barometric whoosh as they all leave -- but you will likely have time for a quick question or two.

    You mention discussing treatment and surgical options, and the possibility of better procedures available elsewhere, and it makes me think there's something specific you have in mind. In my case, there were times where I had options and there were times where there simply weren't other options.
    posted by mochapickle at 7:22 AM on December 29, 2021 [4 favorites]

    Best answer: There's usually rounds in the morning when doctors and nurses visit and discuss things. Being there for that time is the most important. If you can't, maybe patient can dial you in. As mentioned, make sure your phone number is everywhere (put it on the whiteboard in the room or tape a paper to the wall) for them to call you and mention often that you'd appreciate a call.

    I think one important job is information tracking for the patient. They're receiving tons of info from every direction while under stress and maybe drugs. They can't necessarily absorb all the info.

    Everything mochapickle said.
    posted by dripdripdrop at 7:31 AM on December 29, 2021 [1 favorite]

    Best answer: I'm not going to try to answer all your questions (and I can't), but here are a few bits and pieces that might help. I'm answering this from the perspective of having tried to support my step-father long-distance as he died of cancer over about six years, plus advocating for and supporting my father throughout his 10-year decline and eventual death.

    First, "daughter from California" is a thing, and was literally me. You are a trope. It is very common for adult children (and equivalents) to want to parachute in and fix/oversee things, and medical staff kind of roll their eyes at us. Context for you :)

    Second, yeah there really is no way around just being there. I think that's how medical staff separate the wheat from the chaff. The chaff is folks who fly in infrequently and want to fix stuff / throw money at stuff, and get out; the wheat is the people who are right there, on-site, day after day, helping.

    More concretely: my step-father and father were both repeatedly hospitalized. In both their cases, it took a while for me to earn the trust of the medical people, and therefore get them to tell me stuff. I did it by hanging around. I waited by bedsides, and in hallways on uncomfortable chairs, for hours and hours and hours. I did have to hang around until the doctor was doing their rounds. But the doctors were never actually the most informationally useful people. They were hilariously (not actually hilariously) abrupt and hurried.

    The useful people were usually the nurses. Once they saw I was serious/committed, they would start trying to help. They would also return my phone calls, which doctors literally never did. Nurses were the ones who would tell me what tests were being scheduled, when results were expected, when the doctor could be expected to arrive, when the doctor was on holiday, what decisions were on the table and when/how they would be made, and stuff like that. If you paid attention, you could tell which doctors they respected and which they didn't, and that helped me figure out where to focus my energy and questions.

    It does help to just be there as much as possible. The medical staff try harder when they know there are people who care. That's kind of depressing for those who don't have visitors, but it's visibly true. And mistakes are super common, and you can help to avoid them. My step-father was once hospitalized semi-pointlessly for over 10 days, and his oncologist literally didn't know. Somehow that had slipped through the cracks. When I arrived (flew in) I called the oncologist's office to find out what the plan was, that alerted them he was hospitalized, and within two days the oncologist had visited and had tests done, and he was released. I don't know what would have happened otherwise. He was just taking up a bed, and nobody seemed to have any kind of plan.

    It's also important (as other people have said here) that if you want to be fully in the loop, the simplest way is to get your relatives to assign you medical power of attorney. That's easy: it takes a lawyer, but it's like a half-hour process. They make a form and your relative signs it. Your relative can still continue to make all their own decisions, but it enables medical staff to share information with you that they otherwise can't. If you don't get medical POA then your access to information is extremely contingent and variable. Some staff will tell you stuff and some won't, and you will never get the full picture.

    Another useful thing is to ensure medical staff are sharing information with each other and/or know what other practitioners are doing / have done. With my father, I was astonished how many times medical people would ask him the same questions over and over again, from scratch, and write down the answers and treat them as gospel. He didn't remember how many heart attacks he'd had. He didn't remember when he was diagnosed with X thing, or what medications he was supposed to be taking. He was old and tired and didn't track that stuff. So I kept files, and would hand them to the medical people. That helped, a lot.

    One last thing. The way you've written your questions suggests you feel like this is a problem that has a solution. But I don't think that's true. It's more like a process. You can nudge its path, you can alter its trajectory. But it's not one-and-done. It's a process with a lot of different players, and there's a limit to how much you can influence what happens. That limit is set by your own energy and hours for it. So it's worth considering for real how much time and energy you have to invest in this, and accepting that's how much influence you'll have over the result. I ultimately came to see myself as a supporting player, mostly enabling the smooth flow of communication so other people could do their jobs better. I hung around, took notes, maintained and shared records, stuff like that. I had originally envisioned myself as a decision-maker/leader/fixer, but that turned out not to be what was most helpful and necessary, so I just .. adapted.

    Oh and also -- I was really careful to not undermine my step-father's and father's agency. It's very common for doctors to start to ignore the patient and their wishes, and focus instead on a relative who is faster and more decisive. Like, doctors would start to address themselves to me rather than my parent. I didn't like that, so I was careful to not enable it.

    Good luck :)
    posted by Susan PG at 7:41 AM on December 29, 2021 [8 favorites]

    Best answer: not to offend or "bother" staff by asking too many questions. So if this kind of advocacy is perfectly fine and expected, it'd be helpful to know that too.

    [I write to the colloquial "you" below but I mean it for whomever this situation applies to, not like you personally]

    it is expected of patients with living relatives who care about them. medical personnel often do not think it's fine. it is vital and necessary. when medical personnel think that nobody especially cares about their patient, they sometimes care less, too. this is too horrifying to think about so don't think about it, just call for regular updates and ask every last question you have. this is all assuming you are a designated decision-maker for the patient or at least listed as someone medical information can be shared with.

    I hope the underlying feeling behind the worry over offending staff is fear that staff will vent their irritation on the helpless patients. you don't have to worry about that; a doctor being irritated is only potentially life-threatening if the patient is the one they're irritated with. the best case is not that doctors see your humility and approve of you. the best case is that they think Oh christ, this fucking relative, the poor old patient, how did they live this long with such an officious pushy child, they must be a saint. a good cop/bad cop act won't work if it comes across as intentional, but when it arises naturally it's very effective. you as the advocate must must must be willing to be the bad cop and let go all vanity about what doctors think of you.

    I DO NOT mean that you should make yourself irritating on purpose. you should of course never distract someone who is trying to perform a procedure or an examination, you should of course never try to enter a room you're not allowed in, etc. but it's so easy to irritate doctors with anxiety and vocal medical ignorance that nobody really has to try, and devoting precious mental space to worrying about how you come across to doctors can be legitimately disastrous when you are a patient advocate. you don't want to antagonize, you do want to be civil, but you simply cannot allow those concerns to occupy much space in your mind. I once shared these duties with another relative and so I know what happens when a person cares more about looking good and humble to the doctors & nurses than they care about double checking that everything has been done and done right. you have to be willing to speak up if you see what looks like a mistake. It is ok if they think you are pushy and entitled, it is ok if you turn out to be wrong. they'll stop seeing you eventually and they'll forget about you. but you will always remember if there was something you could have done but thought you shouldn't.

    tl; dr: you have to be willing to bother doctors & nurses when it is necessary, no matter how excruciating it feels. it is not only easier but much more effective when you do it for someone else than when you do it for yourself.
    posted by queenofbithynia at 5:37 PM on December 29, 2021 [2 favorites]

    Response by poster: Just wanted to thank everyone who chimed in on this; I learned a ton, and while I wouldn't call it a 100% empowering experience for anyone, the compassionate advice here helped me to assist in ways that felt gradually more productive as time went on. I'll also feel much better equipped the inevitable next time something like this happens. Thank you all!
    posted by Bardolph at 5:19 AM on January 15 [2 favorites]

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